Sydney – A trip six years in the making

G’day friends and welcome to another Sunday and another blog post!

 

I promised I would get another one out this week didn’t I!?

 

As you are reading this I am (hopefully) near the finish line of the Sydney Marathon for a very important reason.

I am here to cheer on my dear friend Amy Shinneman of Humbly Courageous and her husband Jamie, who are participating in this year’s marathon.

 

If you have been around here for a while, you may recall me talking about Amy. But for those of you who are new, let me catch you up on our friendship, and why being in Sydney is such a momentous and emotional occasion for both of us.

Amy is from Indiana in the US. She is a wife, mother, writer, advocate, and marathon runner. Oh, there is one extra little thing. She also has Bethlem Muscular Dystrophy.

 

She and I met online just after lockdowns ended in 2020 from memory. I had just started Living Abled and felt like I was writing into a void. That was until I got a message from Amy introducing herself and saying she couldn’t believe she found someone who not only had the same disability, but also essentially the same type of MD as her.

 

As we got talking it became apparent rather quickly that both of us shared so many similarities in our symptoms growing up. In some ways, it was as if we were twins just a couple of decades apart from each other (don’t mean to age you Amy!).

We shared our diagnosis journey with each other, Amy’s formal diagnosis only happened a couple of years ago, even though she has been living with MD her entire life.

 

We shared our highlights, struggles, fears, grief, and our anger about our diagnosis with one another. The relief it felt to know I had someone I could lean on who just understood me on a level no one else in my life was priceless. Not only that, but her marriage to Jamie and how she has lived her life gave me hope that that was something possible for me to have in my own life.

Dating and marriage for so long seemed unrealistic to me because of how frequently I would read and hear people say that Disabled people are unworthy of marriage, and why would anyone date someone with a disability in the first place. But seeing Amy and Jamie’s relationship through our conversations and also through social media made me hopeful. Just as much as it did seeing her thrive and finding ways to constantly push herself to continue to be independent and live a healthy life well into her forties (and now 50s.. again sorry Amy for aging you!)

 

We often spoke and dreamt of meeting in person. Where would we meet, what it would be like, who would fly to whom. But flying for people like Amy and me isn’t an easy task. Bags, wheelchairs, manual handling, having our travel partner (in my case my family, in Amy’s her husband) help us out of wheelchairs, and out of airline seats. 

 

There are so many moving parts that it’s can be very overwhelming and complex without adding on a long-haul flight and having to worry about your body and joints becoming stiff during the flight (not to mention trying to use a bathroom on the flight!).

 

Amy and I knew that one day we would be able to meet in person. We just didn’t exactly know when.

 

That was until late last year when Amy said to me “We are running the Sydney Marathon!”. I knew immediately I had to try and get to Sydney.

 

Fast forward to a few weeks ago. I messaged Amy “flights are booked! I will be there!”.

 

There is so much excitement, anticipation and emotions thinking about this weekend (Monday as I am writing this). It may only be a quick fly in fly out trip. But I am sure we will make the most of every second.

 

Naturally I had to ask Amy if she would share what this trip means to her:

 

“Having the opportunity to travel to Sydney, Australia with my husband to run our fifth world marathon major, is a dream come true. While that is certainly meaningful to us, this trip isn’t just about running. This trip is orchestrated by the power of human connection. Having the opportunity to meet Rhi, is something I have hoped for my whole life. To meet someone face to face who instantly gets what is is like to live with our rare condition. This is indeed the opportunity of a lifetime, and one she and I have talked about for six years!”

 

I can’t wait to finally be next to someone who has been such a beacon of hope to me, not to mention a dear friend, for the past 6 or so years. Like Amy, I have also never met someone with the same disability. Neither has her husband, and neither has my parents. I am sure when we see each other on Saturday (all going well!), there will be a lot of tears and hugs all round. Followed, I am sure, by many laughs as Amy and Jamie get used to a whole new country.

 

I am equally excited to cheer them on at the marathon. By running in these marathons they are raising so much awareness of disability life, and muscular dystrophy. They are also essentially running for everyone of us who can’t.

I am in awe of the partnership Amy and Jamie have. And I truly cannot wait to finally meet my friend, and finally thank the person who has given me so much hope and positivity, in person.

Bring on Sydney!

Rhi.